Changing Their Minds With Time: A Comparison of Hypothetical and Actual Reproductive Behaviors in Parents of Children With Cystic Fibrosis

Sawyer, Susan Μ; Cerritelli, Belinda; Carter, Lucy S; Cooke, Margaret; Glazner, Judith; Massie, John

doi:10.1542/peds.2005-2551

Cited by 71 publications

(76 citation statements)

References 24 publications

(33 reference statements)

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Section: Effect Of Positive Newborn Screening Results On Reproductive mentioning

confidence: 99%

“…10,42 They decided against having additional children, planned more or fewer children, or delayed their next pregnancy. 10,42 There was little concordance between parents' plans following the diagnosis and their subsequent actions. The majority of parents who reported that they did not want more children later decided to have children, and the majority of those who reported that they wanted a larger family size than they initially planned later decided to have no more children.…”

Section: Effect Of Positive Newborn Screening Results On Reproductive mentioning

confidence: 99%

“…For parents of children with cystic fibrosis, reproductive actions were related to the health of the affected child-parents were more likely to have additional children if the child was in relatively good health and the family was coping well. 42 At the time of diagnosis, over half of the parents expected to use prenatal diagnosis for future pregnancies. 10,22,42 Expectations about termination of the pregnancy varied and were affected by the religious views of the participants.…”

Section: Effect Of Positive Newborn Screening Results On Reproductive mentioning

confidence: 99%

“…42 At the time of diagnosis, over half of the parents expected to use prenatal diagnosis for future pregnancies. 10,22,42 Expectations about termination of the pregnancy varied and were affected by the religious views of the participants. 10,34 The use of prenatal diagnosis differed from the initial intentions for 67 percent of parents, and changes occurred in either direction.…”

Section: Effect Of Positive Newborn Screening Results On Reproductive mentioning

confidence: 99%

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Developing a Conjoint Analysis Survey of Parental Attitudes Regarding Voluntary Newborn Screening

Whitehead¹,

Brown²,

Layton³

2010

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Newborn screening for genetic conditions is conducted in all 50 states, but parents' opinions of such screening are largely unknown. As newborn screening has expanded from a few relatively common conditions requiring early treatment to a broader spectrum of conditions with uncertain prognosis, it is important to understand parents’ views. Stated preference surveys provide quantifiable data on parent preferences about features of newborn screening tests, the economic value of testing, and the effect of a test’s features on its probable uptake and value. We conducted formative research and developed a stated preference survey on parents' preferences regarding voluntary newborn screening. We reviewed the literature on parents’ attitudes toward newborn screening and factors related to those attitudes and developed a list of condition and test attributes. We narrowed the list by expert review and conducted focus groups with parents of infants to determine if they understood the attributes and to see which attributes parents viewed as relevant. We found that some parents struggled with the probability-based attributes. The most relevant attributes were developmental disability, physical disability, incidence, recurrence, lifespan, sensitivity, and cost. The survey developed from this study could provide data for economic evaluation, test prioritization, and educational material development.

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Section: Effect Of Positive Newborn Screening Results On Reproductive mentioning

confidence: 99%

Section: Effect Of Positive Newborn Screening Results On Reproductive mentioning

confidence: 99%

Section: Effect Of Positive Newborn Screening Results On Reproductive mentioning

confidence: 99%

Section: Effect Of Positive Newborn Screening Results On Reproductive mentioning

confidence: 99%

See 2 more Smart Citations

Developing a Conjoint Analysis Survey of Parental Attitudes Regarding Voluntary Newborn Screening

Whitehead¹,

Brown²,

Layton³

2010

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show abstract

“…Our findings are also limited because we assessed hypothetical participation, which may not accurately predict actual uptake. [44][45][46] For this reason we focused our analyses on the relative differences between expected participation and a responsibility to participate. Further, the intent of the study was not to predict behaviour but to assess public expectations about participation, or a responsibility to participate, in WG/ES-based NBS programmes.…”

Section: Discussionmentioning

confidence: 99%

Public views on participating in newborn screening using genome sequencing

et al. 2014

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Growing discussion on the use of whole-genome or exome sequencing (WG/ES) in newborn screening (NBS) has raised concerns regarding the generation of incidental information on millions of infants annually. It is unknown whether integrating WG/ES would alter public expectations regarding participation in universal NBS. We assessed public willingness to participate in NBS using WG/ES compared with current NBS. Our secondary objective was to assess the public's beliefs regarding a parental responsibility to participate in WG/ES-based NBS compared with current NBS. We examined self-reported attitudes regarding willingness to participate in NBS using a cross-sectional national survey of Canadian residents recruited through an internet panel, reflective of the Canadian population by age, gender and region. Our results showed that fewer respondents would be willing to participate in NBS using WG/ES compared with NBS using current technologies (80 vs 94%, Po0.001), or perceived a parental responsibility to participate in WG/ES-based NBS vs current NBS (30 vs 48%, Po0.001). Our findings suggest that integrating WG/ES into NBS might reduce participation, and challenge the moral authority that NBS programmes rely upon to ensure population benefits. These findings point to the need for caution in the untargeted use of WG/ES in public health contexts.

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Prenatal Diagnosis of Cystic Fibrosis

Feldman

Monaghan

2009

Genetic Disorders and the Fetus

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Changing Their Minds With Time: A Comparison of Hypothetical and Actual Reproductive Behaviors in Parents of Children With Cystic Fibrosis

Cited by 71 publications

References 24 publications

Developing a Conjoint Analysis Survey of Parental Attitudes Regarding Voluntary Newborn Screening

Developing a Conjoint Analysis Survey of Parental Attitudes Regarding Voluntary Newborn Screening

Public views on participating in newborn screening using genome sequencing

Prenatal Diagnosis of Cystic Fibrosis

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